Nov 15th 2008
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we managed to bring Tyler home yesterday night, as the angiogram isn’t going to be for another week they think. and they have finally managed to get Tyler to maintain his blood pressure after 14 days thank god. Makes me very sad he has had such a hard year so far. and now his right side has been affected like his mouth arm and leg. they said its going to be a long recovery but there optimistic he will make a good recovery! Tyler has to have a head and kidney angiogram but has had to wait quite awhile as they hadn’t been able to do it right away because of the swelling in his brain from the 2 strokes, there doing the head angiogram to see what and how they are going to do the surgery, and the kidneys because they can cause stokes as well and they want to have a good look at them as well (who knew) but I guess the surgery will follow quite soon after that, they were unsure if they were going to let him home until after the surgery which I think will fall just around Christmas, which makes us sad but we will have to celebrate Christmas and Keira’s birthday when things settle down after all they don’t know when these dates happen thank god.
I will try and update when I have.
Nov 2nd 2008
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Unfortunately Tyler suffered a stroke yesterday while at home with Nic, we are now at the hospital trying to figure out what the cause and treatment needs to be, his nuerologist is fairly certain that it is from the stenosis(narrowing) which is particularly bad on his left side, Tyler is subsequently now very weak on his right side, the doctors are hoping that this stroke was mild and hope that he will regain all or most of his previous functions given time and physio. We will keep everybody posted with any news. Nicola & Marvin

Update: Tyler had a MRI done yesterday,which showed Tyler has had 2 strokes in the past 10 days,he is currently in intensive care at the hospital.
Please send positive thoughts our way!

Oct 18th 2008
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Hello, so I thought this would be a perfect time to sit down and write a post. Tyler is in hospital right now he has just had surgery on the 16th Oct he has had his boy bits sorted out again this is stage two. I don’t want to go in to many details as this will not go down well with Tyler as he gets older and reads this. he has had skin taken from the inside of his mouth and graphed down below as scar tissue has been grown over his urethra and making it hard for Tyler to go toilet, so he has a catheter in for five days to keep things open and for the graph to take and fingers crossed it doesn’t reject!! Tyler also had a MRI done while he was under antistetic to check his 6 brain anyerism,for most of you who follows Tyler’s progress Tyler had a MRI done at the beginning of the year which showed narrowing of the vessels in the brain which suggested Moya Moya so they did a angiogram and instead of finding Moya Moya they found 6 brain aneurisms we got the results the day after we brought Keira home from the hospital, so now back to yesterday we got the results while we are in hospital that should of set off alarm bells as you usually have to wait 2 weeks for the results. So we where told that the narrowing of the vessels seen 6 months ago have gotten allot worse so the four doctors dealing with Tyler’s narrowing/brain aneurisms are going to be sitting down and discussing the next step for Tyler. We where told he can not go on aspirin because it thins your blood and because of the aneurisms this is not a good idea to do. The Dr said the fact that his brain is compensating for the narrowing is a really good sign and there happy as with the narrowing it could at anytime cause Tyler to have a stroke!!

I hate to write these posts and it seems that they are getting to be the norm recently, we as a family try hard to pick our selves up and get on with things and we don’t feel sorry for our selves. I mean Tyler is our miracle he is my pride and joy I love him so much it hurts. I am sure every mother says this, what I am trying to say is we hear allot “I don’t know how you do it” and “it must be hard ” and if I am %100 honest I love every moment of being Tyler’s mum I am the luckiest mother in the world to be given Tyler he is a joyful, loving gift we did something right in life to have him!! And now we are parents of two wonderful kids there different in every sense I mean who could ask for more!!

With all this happening the trip to America next year to the conference, is more and more needed for Tyler and our family to see the #1 specialist. And this is and always has been one of our number one priorities.

Before we came into hospital, we finally cracked the potty training, I am so proud of him, he was doing so well, he was fully potty trained within a week when it finally happened think the delay with the potty training was with the boy bits issue. I hope when we get Tyler home after the five days in here he will still want to go on the toilet (fingers crossed)

Tyler is doing fantastic things in kindergarten this year we are ever so proud of him, he knows all his colours now, he is counting up to ten some times gets confused though but hey its all in the right direction right. He has just started writing the letter “T” for Tyler I couldn’t be a prouder mother right now his gains have just been amazing. His speech is really getting up there as well.

So I should go and lay down and watch Toy story with Tyler for the 3rd time today!

Please keep positive thoughts for our Tyler, and I hope our next post is on a positive note.

Take care of yourselves

Sept 1st 2008
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Very sorry for the lack of updates on the website recently, it’s been a very busy summer holiday. Tyler’s calendar it’s going to get very busy once again starting tomorrow as Tyler starts Kindergarten 5 days a week!!

So where do I start……… I have a little quite time and this why I am able to sit down and do a post because Tyler is away for the long weekend with our good friends and there kid’s camping, we thought he would miss us but isn’t even interested in speaking to his parents who are missing him like crazy, this house is not a home with out our boy!! He is coming home today so we are very excited!!

Our summer holiday was quite a strange one, I ended up in hospital have two unexpected major surgeries and had to stay in hospital for a week, I have to say I have the most wonderful family ever they where wonderful Marv took the week off to look after the kids and took to it like a natural and the kid’s where good as gold for there dad, I couldn’t be anymore prouder of them all!!

I have really been working hard at potty training as Tyler shows no interest in ever coming out of his nappies/diapers, I have worked like a mad women on this all summer as I wanted him to go back to school in underwear, I have to say he is not 100% trained BUT… he has been going on the potty but has t be prompted to go otherwise he hides in the house to go, you kind of know when its going to happen he goes very quite LOL.

Tyler’s speech is coming on allot better, still have quite a way to go yet, but strangers understand him sometimes now. Now that we are going to in September its a stressful time for us again as Tyler will be under going allot of tests for his brain aneurysms, we have allot appointments so we are going to be busy-busy yet again!!

Thank you so much for all of you who have wrote to us and left lovely comments,we really enjoy hearing from you,and this is why I try to make time to update with my posts.

Hope your summer was fun and relaxing!

Until next time xxxx

May 28th 2008
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Just a quick update to say we have had some lovely picture’s taken as a family and picture’s of Tyler & Keira on there own,I will be updating the website shortly with a update and pictures done by totshots. Please visit there website the link is below. We had a fantastic experience I will always hold these picture’s close to my heart. I also want to thank Angie for this kind gift you have given us an amazing gift which will last forever!!

Thank you to Jody for a great day and taking such stunning picture’s of our family, you caught my kids personality perfectly your amazing!!

www.totshots.ca

April 2nd 2008
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Sorry for the long delay, Tyler had his angiogram done recently and we found out Tyler has six brain aneurysms which came as a shock as we where not actually looking for this. We are waiting to hear the opinion and advice from a specialist in America who has dealt with other children with MOPD. It has been a really trying time for our family but we are taking each day as it comes and getting on with it. We also just moved in to our own house “FINALLY” on the weekend so this is a new start for us and we are truly happy!!

I also wanted to address a question which I have been emailed a few time’s, I have been asked for new pictures of Tyler on the web site the reason I have not put any on is because someone has been stealing them off the web site and using them as a icon to there username on a blog web site, this is very hurtful and distressing for us and is considered “STEALING”. I would be very grateful if this would stop, as now everyone is suffering for those who have stolen family pictures from us. Can I remind you that these pictures are copy written!! I wish I knew who was doing it and I could email them directly instead of having to tell everyone.

On a different note Tyler is doing very well apart from the medical issues, his speech is really coming on. I said to him the other night “Come on say night to daddy it’s bed time” he turned around and said” Mim mee No not yet” wow was I ever shocked!!
His new school is fantastic I could not ask for better there brilliant with Tyler!!

January 14th 2008
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Happy New Year and I hope everyone had a lovely Christmas too!

A couple of things Tyler is now a big brother and loving it! This was a shock to us to have her almost 3 weeks early but the pregnancy did not agree with either of us towards the end. The fluid around Keira was very low on the 5th percentil, and I was showing signs of pre eclampsia. I wasn’t able to deliver Keira which I am very sad about due to the fluid being so low it would have put stress on her so I had less than 24hrs notice that she would be delivered by C - section on the 29th Dec 2007 @ 10:04 weighing 6lbs 14oz 19 1/2 inches Keira Louise White was born we where over the moon. Which quickly changed as Keira stopped breathing and was taken away to special care!!

We where told she would probably be in there for 2 hrs at the most, which ended up by being 3 days and we had to fight to get her back.Keira had fluid on the lungs which she does suffer with a little still, she had some feeding delays, she also has a heart murmur. These in the big picture are not big problems but where a huge shock as I had dreamt through out my pregnancy of being one of those mums who had there baby next to them in there room, it did happen for one night and then we went home. She is like a dream she sleeps, wakes for a feed and falls asleep 5 minutes in to a feed. She is fed on demand as she will only take a little amount being woke from a sleep. We are working on the night feeds we think she has her days and nights mixed up as she will go 5 hrs during the day and 3 1/2 hrs at night. Tyler has adapted so well we are so very proud of him he loves her he is not jealous he has had his moments but they have been with me but he is relaxing with me now so all is good.

On a different note we have had Tyler’s results back from the CT scan done before Christmas, I can not tell you to much at this point but the results where not good, It looks like from the report from the hospital Tyler has Moya Moya (which is explained in my previous log below) the scanned showed the narrowing of a vessel on the right side. Tyler’s Dr is currently in talks with Dr Bober who sees all the MOPD children but he is in America, And a specialist who deals with Moya Moya and he works along side Dr Bober with our children. This is a very hard subject for us I don’t like to talk about it. Marv found out the day before I was discharged from hospital with Keira and would not tell me until the day we both came home as he thought we would not be discharged from hospital because I was a wreck!! So the hospital here want Tyler to have a digital angiogram which is a central line fed up Tyler’s groin and fed up to his neck this holds a 15% risk for a average child so as you can imagine that’s why Tyler’s Dr and me and Marv are really panicking as this is only a test. The test will tell us 100% if Tyler has Moya Moya as it will show up on the scan as a puff of smoke (this is where the name Moya Moya came from)

We are not religious people, but please pray for our baby boy I will try to keep you all updated but please understand this is a very difficult time for all of us!!

Thanks you for all your lovely comments recently.

29th-december-keiras-b-day-5.jpg.31st-dec-07-1.jpg

ox ox ox ox

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December 8th 2007

First I would like to “Thank” all the people who have contacted us and left messages lately from “Pick me up”.Most have touched us deeply and has restored our faith in people again,I look forward to the day I can sit Tyler down and open his keepsake box up and sit him down at the computer and show him how much he is loved by people around the world!

Secondly I would like to apologize for the lack of updates on the web site,its been a very crazy time for us.Tyler has had a lot of change in his life recently but we are 100% sure its all for the best. We made a hard desion to remove him form his special needs program that he has been attending for over a year and place him in another special needs program which he starts this coming monday, as you can aprecate I cannot go in to details of what and why we removed him,but as the saying goes “Things happen for a reason” and I am a firm believer in this saying!

We have also had a very stressful time with our hospital in regards to the MRI/MRA for Tyler that is very over due now,it has been cancelled three times now and with a day notice which has been very hard to deal with.I guess there is a new anesthesiologist at the hospital and he has seen Tyler’s case file and we have not experienced this much since we have moved to Canada but the Dr. has been scared by his size as Tyler is so very small for his age, we came across this a lot in England but not here so it has really caught us off guard! Tyler’s next booked MRI/MRA is on the 18th December 2007 fingers crossed it will go ahead as planned and we can move on and try to get on with our lives as normal as possible. As this is such a stressful time we just put everything on hold when these appointments are coming up as you never know what news you are going to get back. If you are wondering what a MRI/MRA is and why Tyler needs these done I will explain below.

What is Moyamoya Disease?

Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage. Moyamoya disease was first described in Japan in the 1960’s and it has since been found in individuals in the United States , Europe, Australia , and Africa. The disease primarily affects children, but it can also occur in adults. In children, the first symptom of Moyamoya disease is often stroke, or recurrent transient ischemic attacks (TIA, commonly called “mini-strokes”), frequently accompanied with muscular weakness or paralysis affecting one side of the body, or seizures. Adults most often experience a hemorrhagic stroke due to recurring blood clots in the affected brain vessels. Individuals with this disorder may have disturbed consciousness, speech deficits (usually aphasia), sensory and cognitive impairments, involuntary movements, and vision problems. Because it tends to run in families, researchers think that Moyamoya disease is the result of inherited genetic abnormalities.

What is the prognosis?

Without surgery, most of individuals with Moyamoya disease will experience mental decline and multiple strokes because of the progressive narrowing of arteries.
Without treatment, Moyamoya disease can be fatal as the result of intracerebral hemorrhage.

So as you can tell this is a horriable time for Tyler and for us as a family and it will take up to two weeks for the results!!

Tyler has been doing very well with his speech and continues to make us laugh with his humour.Tyler has been putting three words together most of the time which makes it a lot easier to understand what he would like or his needs are at the time. With Christmas coming up we always like to take Tyler to get his picture done with Santa but for some reason this year he is really scared of Santa but on the other hand I call him “Mr Christmas” he is so excited about the Christmas trees and Santa but try to put him on Santa’s lap and he grips your neck and screams so we are not pushing it this year next year he will have his little sister with him nexy year I am sure he will have a change of mind by that time. We have discovered over the last year Tyler is absolutely terrified of mascots we think it’s to do with the size as in his eyes there are HUGE this breaks my heart to see him like this as I think Santa is in this category but we will have to work at it little by little until he feels safe.

On a different note, Baby is due in another 40 days Yippee,I am very ready for the baby now I feel very uncomfortable I have to say. I went to my anti natal appointment at 34 weeks I am measuring three weeks ahead so I am going for another scan next week to see how big she actually is and if I will now need a c section or if I can have her naturally which I would like to do if I could as Tyler was an emerg c-section being my last baby this would be what I want.

I am due on the 17th Jan 2007 so I am not sure when my next update will be,but as soon as I have the time I will update you all and “Thank You” for all your kind words and suppo